Tics/PANDAS/Epilepsy/OCD?

[Guest Guest_shannon]

Here's a great story, if anyone at all has any suggestions or help to offer after reading this PLEASE let me know! In April of 2002, my 6 yr old my son fell off his bike, hit his head but did not lose consciousness, 2 days later his eyes began to do the hard blinking, over the next 4 days it progressed to eye rolling, his head going back, his mouth opening & chattering and so into the ER we went. They kept him in for ONE WEEK and came up with PANDAS and Frontal Lobe Epilepsy. His ASO titer was elevated as well. The EEG showed seizure activity in the frontal lobe. He was put on seizure meds. In 1st grade he was tested for ADD/ADHD and it showed positive..however unable to really tell due to the epilepsy. he was put on straterra in jan 2003 along with the Trileptol for seizures. Due to the PANDAS scenerio whenever he would have an outbreak of eye tics we would have his titer tested and sure enough, it was always elevated. We finally found a dr that would put him on penicillin, which he has been on for 1 yr now. His last titer test showed negative but his DNAse was still high indicating strep still in his bloodstream. He remains on the penicillin, HOWEVER in April 2003, it all started again....same thing exactly! Now in April 2004, AGAIN!! He was doing extremely well all year long until APRIL!! we had him tested for allergies and nothing came up! he just spent 4 days in the hospital again and this time the seizures are in the right frontal, left frontal and back part of his brain along with "something" else cohabitating in there that the drs cannot figure out what it is. Any ideas? Has anyone ever heard of this before? When he was 4 he was diagnosed with oppositional defiance disorder; in 2003 he was also diagnosed with tourettes then when we went to the "specialist" in tourettes he determined he did not have it. Now they say its epilepsy, add/adhd and some form of movement disorder that accounts for the tics. The tics appear on the EEG has abnormal discharges. HELP!!!

[Chemar]

Hi Shannon

 

I just wanted to welcome you to Latitudes and to tell you how I feel for you and your son with what he has been thru.

 

I have contacted Ronna, who is very knowledgable re PANDAs and also has a lot of input on the fact that sometimes certain antibiotics are not 100% effective. She may be away at present, but I know she will check in here as soon as she gets my email.

 

 

I honestly have no answers to what you are observing.

I do pray that you will find the answers you need to help your precious child.

 

blessings to you

remember....there is ALWAYS hope!

Cheri

[Ronnas]

Hi Shannon,

 

It sounds like you have a few things going on with your son. Have you been to braintalk. I would suggest you also post this on the epilepsy board at braintalk. I would leave a link but I cannot get on braintalk right now.

 

You said that your son was on Strattera and Trileptol. Is he still on these meds?

 

When I can get on braintalk there was some recent discussions about Strattera that I can provide a link for if you would like me to. I do not have experience with these meds but I think? that Strattera could possibly have a side effect of tics...I am not sure about this...sometimes I lose track of some of the stuff I read if it does not relate to my son. As well I do not have experience with Trileptol.

 

A thread you may want to read through on the old braintalk forum about PANDAS is at:

 

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005700.html

 

What was your sons response to antibiotics? Did his tics improve with the antibiotics?

 

My son did not respond to Pen Vk but did very well with Keflex and Clindamycin.

 

As far as prophylactic antibiotics go...well we had our son on antibiotics for over a year prophylactically. My present opinion is that prophylactic penicillin will not help prevent strep. I am not a doctor though so please go with your own gut on this. I think that the antibiotics my son was on contributed to a proble with yeast and a "leaky gut". My feeling is that teaching really good handwashing at school and at home is the best prevention for strep as well as boosting our child's immune system with good nutrition and vitamins ets.

 

One suggestion I would have is to do a food elimination diet to make sure your son is not reacting to any foods. We did this for our son and it was the best thing we could have done. A great book is called "Is this Your Child" by Doris Rapp. My son reacts to milk, eggs, corn and chocolate. With the elimination of these foods my son has done very well. We have my son under the care of a pediatrician and a naturopath doctor. You will find tons of information about vitamins and supplements here on Lattitudes and Braintalk.

 

Finding answers is not a quick or easy process but answers are possible.

 

Has your son had a MRI or CT scan?

 

The fact that the tics show up on the EEG as abnormal discharges seems like it is more related to seizures than tics which is why I suggested the epilepsy forum at braintalk. Tics do not show up as abnormal discharges on an EEG.

 

My son's original dx was with siezures but as time went on we realized this was not the problem for my son.

 

About the PANDAS...from what I have read it is best to repeat the ASO titer every 3 or 4 weeks for an additional 1-2 titers (I think this can be applied to the Anti-DNA test as well) to observe a trend. For example, you have said that each time your son's titers were drawn they were elevated. Following a trial of antibiotics did the titers fall in the following months?

 

I know how hard all of this is. Please let me know if I can help.

 

Take Care,

Ronna

[Guest Guest]

my 6 yr old my son fell off his bike, hit his head but did not lose consciousness...came up with PANDAS and Frontal Lobe Epilepsy. ...In 1st grade he was tested for ADD/ADHD and it showed positive... Due to the PANDAS scenerio whenever he would have an outbreak of eye tics ... finally found a dr that would put him on penicillin...HOWEVER in April 2003, ... in April 2004, AGAIN!! ... until APRIL!! ... "something" else cohabitating in there.

 

>>

[/i]my 6 yr old my son fell off his bike, hit his head but did not lose consciousness...came up with PANDAS and Frontal Lobe Epilepsy. ...In 1st grade he was tested for ADD/ADHD and it showed positive... Due to the PANDAS scenerio whenever he would have an outbreak of eye tics ... finally found a dr that would put him on penicillin...HOWEVER in April 2003, ... in April 2004, AGAIN!! ... until APRIL!! ... "something" else cohabitating in there.

 

>>Whew! Poor DS! I had similar things happen to me around that age but not in that order. --Had auto-immune infection at birth (mid-'45, when all the pennicillin was at the WWII 'fronts'), evolved to strep; got staph infection at 4- due to bad gash on knee [talk about a 'good' one/story, but we won't go there now...], had recurring acute strep flareups, earaches/infections; at 10 got hit in the head with a rock [we won't go there now, either...] and had concussion; got eye tics on top of other tics that lasted 'til 20's, esp. when my eyes started getting strained due to nearsightedness+farsightedness fighting each other]...had major outbreak during college and gamma globulin Tx." But, hey isn't this 'normal'? [hospital humor, again; bad habit...]

The April connection, though, what's with that? Things do get curiouser and curiouser with these co-morbidities, though, I can tell you. Not saying that the following has ANY actual relation to your son's condition or mine, but it was very curious but couldn't possibly be coincidental, it seems to me, that there was this strange correlation with seasons ( a la SAD), school year/school&holi-daze, all w/associated stress cycles or phases. It took me a number of years to realize that it's after you fight off a trigger/flare that you are most susceptible, and I noticed in my case that I tended to lie alot about how well I felt or how poorly I was protecting myself against re-currence: eg esp after winter/cabin fever and not being let go outside in the newly arrived spring weather, you know? Get all sweaty and then a mile home and nearly frozen when I got there, shivering, etc.; temperature spikes overnite, sore throat the next day. With the ADD 'forgetfulness' (oh, yeah, mom, my JACKET! yeah!! then on goes the jacket, away goes mom and off goes the jacket). Of course, I also got hyper-reaction from bee stings, pollen, mold, you name it-- just about anything could trigger a relapse. Definitely additive and definitely not 'aphasic' or coincidental. April? Hmm...yep. Doesn't surprise me but like I said, I dunno.

The konk on my head though was a major setback. Now there was a concussion and brain damage on top of brain damage. Two 'poles' fighting it out. No CT/MRI or EEG's then. It's a tribute to modern america (and the penicilling returning from the War along with the vets) that one not only survived but went on to over-achieve! Yeah!! We'll lick this polio thing! Nothing's gonna keep THIS generation down! [cough cough tic toc i'm ok. No, seriously-- dr. phil sez so, too!! and tony robbings!] Well, I won't get too carried away. [more hospital humor; I can't help myself.]. If nothing else, you can tell this story to your son and he'll get some misery-loves-company value of it. And please give him a [[[hug]]]] for me! You, too, for being a nice, protective, and loving mommy!

[tictoc]

I had similar things happen to me

 

Hey, tic toc, why you don't you 'forget' to sign in? Now, tell the nice people that you're sorry!

I'm sorry..but...but...but..mom!